Introducing apertOWL

For many months I have been hard at work cultivating a passion that has been growing deep in my heart. When Aiden was born, Ricky and I scoured the internet and sat with trepidation as we clicked from image to image, site to site reading about the grim future that was in store for our brand new baby boy. Our hearts broke. And yet, from the moment we were thrust into this new life of raising a child with a craniofacial condition I was determined to make the most of it.

I started this blog to provide info about Aiden's condition, updates about his surgeries and recoveries and to show everyone that in spite of it all? We were going to be okay. Life was going to be different than what we expected. But okay.

I wish someone was there to tell me just how fulfilling and wonderful our lives would be.

Over the years, I began receiving emails from families across the United States who happened upon More Skees Please as they were doing research about Apert syndrome. Either they had a child who was just diagnosed or someone they knew did. Aunts, moms, grandparents - they'd email and say that this site gave them hope. That they finally felt like they could breathe again since the first time they heard the words Apert syndrome.

All because of Aiden.

The more emails and messages I got from other families, the more I knew that others were seeking a positive outlook just as we hoped to find amid our despair in those first few weeks. With every family that reached out to me the desire grew to create something more significant than my family blog.

Chris and Kerry Lynch live in Chicago and have a daughter with Apert syndrome. They found our blog when Mary Cate was a few months old and from the moment we first connected it was clear that they too were going to share the same positive outlook as us. Together with the Lynch's, the idea for apertOWL grew.

We are currently hard at work to bring this idea alive. We will be applying for our 501c3 status to make apertOWL a full-fledged nonprofit organization.Our mission is to be a beacon of hope for families affected by Apert syndrome by providing support, resources and inspiration throughout their journey.

We have a million ideas - everything from becoming a strong online presence with accurate information to special ways to show support for these amazing kids...and so. much. more.

And apertOWL will not only benefit those who have a child with Apert syndrome. There will also be resources for family members, friends, and medical professionals as well!

The plan is to "officially" launch in September of this year. But in the meantime, we are building the apertOWL community on Facebook (already more than 1500 and going strong!) and we have a teaser page up and running at www.apertowl.org with a progress bar showing how close we are to launching the full site.

We would love for you to help get the word out - so PLEASE like apertOWL on Facebook and share with your friends and family. Everyone can benefit from learning about Apert syndrome even if it doesn't touch your life directly. Empowering the general public with accurate information will help ensure that kids (and adults) living with this condition get the support and acceptance they deserve!

PS -- The final part in my Love Story series will be coming, I promise! But I was too excited to share this first :) If you missed it, you can read part 1 here and part 2 here.

4 comments
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I only found your blog because I was searching for who had done Dr. Oz's 3 day cleanse. But I had to start reading about Aiden. And I have to say that he is cute. You don't have to wonder if I'm lying. All of his pictures he has the biggest most genuine smile on his face. It communicates his personality and just what a happy boy he is. I can never get my boys to smile like that for photos. I would give anything to have my kids smile like Aiden.

You will have to apply for SSI benefits with your state social services department. Contact the health department or look online for the correct number to call. Every state has different qualification criteria - and most is based on income and value of assets - so I cannot answer that question for you. I know many families who have additional medical coverage/financial support for their child with Apert syndrome through SSI benefits, but it all depends on your specific case. Hope that helps! Good luck :)